To transform lives, we must first make Nemaline Myopathy (NM) known. Spreading awareness is more than just sharing information. It’s how we eliminate isolation for newly diagnosed families, educate the broader medical community, and rally the resources needed to accelerate research toward effective treatments and a cure.
Whether it’s May or any other time of year, there are many simple, impactful ways you can help elevate the profile of Nemaline Myopathy and support the work of A Foundation Building Strength (AFBS).
Annual Awareness Campaigns
While awareness is a year-round mission, our global community comes together each spring for focused initiatives to amplify our collective voice:
Every May, AFBS leads global efforts to celebrate Nemaline Myopathy Awareness Month. Throughout the month, we share powerful patient profiles, community stories, and scientific updates to highlight the strength, resilience, and needs of those living with NM.
May 31st marks international Nemaline Myopathy Awareness Day, a dedicated day of global solidarity. Community members, families, and advocates around the world wear blue, host local gatherings, and unite online to build visibility and show that no one navigates this journey alone.
Our cornerstone spring fundraising and awareness event, the Annual NM Awareness Share-A-Thon, takes place throughout the month of May and ends on NM Awareness Day. The Share-A-Thon empowers community members to create personal fundraising pages, make direct contributions to research, and share awareness posts across social media.
The Power of the Share: Thanks to generous matching donors, reaching community social media share goals during the Share-A-Thon unlocks matching gifts that double the impact of every dollar raised for research! Check out our 2026 Share-A-Thon here.
How to Raise Awareness Year-Round
You don’t have to wait for May to make a difference. Here’s how you can help build strength 365 days a year:
One of the easiest ways to support AFBS is by connecting with us on social media and sharing our content with your personal network. When you share our posts, you help us reach undiagnosed families, potential donors, and researchers worldwide.
- Follow AFBS: Stay updated on scientific progress, community stories, and events on Facebook, Instagram, YouTube, and LinkedIn.
- Follow AFBS Youth: Support our youth advocates by following @AFBSYouth on Instagram, managed by our AFBS Youth Ambassadors to spotlight the lives and achievements of young people affected by NM.
- Reshare Our Content: Whenever you see a research update, blog post, or video from AFBS, take a second to like, comment, and share. Every reshare expands our reach!
Educating others in your day-to-day life is easy with our NM Awareness Cards. These handy, pocket-sized cards provide a concise overview of what Nemaline Myopathy is, how it affects skeletal muscle function, and where people can learn more about AFBS.
- How to Use Them: You can keep a few cards in your wallet or bag to hand to healthcare providers, educators, family members, or acquaintances whenever you want to bridge the gap between curiosity and understanding.
- Get Yours:
- Download & Print a set of Awareness Cards
- Request a complimentary pack of NM Awareness Cards delivered straight to your home by filling out this form!
Personal stories are the heart of our advocacy. If you or a loved one is living with Nemaline Myopathy, sharing your experience helps put a face to the condition and inspires others to get involved.
Get Featured: Reach out to us at info@buildingstrength.org to be featured in our Faces of NM blog series or highlighted on our social media channels.
Host Your Own Fundraiser: Whether you’re running a race, celebrating a birthday, or organizing a local event, you can set up a personal fundraising page anytime to support AFBS-funded research.
Together, We Are Building Strength
Your action fuels progress, whether you’re sharing a video online, handing out an awareness card, or participating in our annual Share-A-Thon. Thank you for raising your voice for the Nemaline Myopathy community!